People with an early, timely diagnosis of dementia have time to make the best of their lives. They can plan finances, power of attorney, a care and living plan…
There is still precious little support provided across the country post diagnosis, until crisis.
Many providers and councils say they provide care co-ordinators for all people with a diagnosis of dementia. But we know they usually don’t. (Initial findings of a survey by ADASS in the West Midlands). There are a few proud exemplars, far between.
There are excellent peer groups scattered across most areas but few people with dementia get to them.
People with dementia, and remember it can happen young, are generally left to their own devices. They lose jobs. They meditate on their forthcoming decline. They become depressed. They lose social contact and community interaction. They may descend into living with misery.
Yes, we talk about living well with dementia. But it’s very hard to feel good about life when sitting around thinking about the future and meeting few, if any, people to talk to.
To live well with dementia you need support, information, contact, when, where and how you want it. You need to be active, engaged, doing things, talking to people; living well saves the country money.
And how many carers get respite from their caring role? Hardly any.
If I had cancer I’d have support, counselling, peer groups, Macmillan nurses every day I needed them.
But dementia is not cancer.
(This is an article I have written for the conference magazine of the International Demwntia Conference in Telford in November where I will be speaking about whether care of people with dementia has improved in the last ten years.)